Saturday, March 26, 2005

This morning Bud and I were playing a matching game - turn over two cards that are the same and you get to take another turn. After a while he began to lose interest and just started turning all the cards over to try to find a match.

For weeks, the top news story has been the Terri Schiavo case and Op-Ed columnists have weighed in heavily with their thoughts on the matter. No other column has struck me as much as Brian McGrory's in yesterday's Boston Globe.

Poor judgmentBy Brian McGrory March 25, 2005

Wouldn't it be something if George W. Bush raced back to the White House from his Texas ranch for something with a little broader consequence than the feeding tube of one woman in a vegetative state whose husband says she would choose to die?Wouldn't it be something if he saw that much urgency in the lives lost in the nation's ghettos every day? Wouldn't it be great if he announced that people are dying every minute the government fails to improve housing for the poor, safety in the streets, education in the urban centers, and job prospects for those who are out of work, and that those deaths aren't acceptable anymore?Wouldn't it be great if he picked out just one person, one otherwise anonymous boy who represents thousands. He could announce that the boy didn't ask to be born into poverty to a single mother and a violent father who has been sentenced to prison.

He could say that the boy shouldn't have to live in a public-housing project where cockroaches race up the bedroom walls at night, where drug dealers have taken over the urine-stained stairwells, where gunshots can be heard in the near distance like fireworks in the suburbs on the Fourth of July.

The president might add that this boy shouldn't have to go to a school where teachers have to reach into their own pockets to buy supplies, where textbooks are older than the students, where learning is an afterthought on the fortunate days when adults are able to achieve some small semblance of calm.

And the president could say that if the government waits just one more hour to act, we're going to lose this child. He might be caught in the crossfire of two rival gangs, dead long before his time. He might join a gang himself, get a gun, turn to drugs, and kill someone else.

Hours matter, the president might announce -- minutes even. The nation has to act, for this boy's sake, for the hundreds of thousands of youths just like him, for the millions who are affected by their actions. Society, he might add, cannot afford to do nothing.

Wouldn't it be great if House majority leader Tom DeLay proclaimed, as he did for Terri Schiavo, that, ''Every hour is incredibly important for this boy."

Wouldn't it also be great if Senate majority leader Bill Frist explained, as he did after the unusual Schiavo vote last weekend, ''These are extraordinary circumstances that center on the most fundamental of human values and virtues: the sanctity of human life."

But they don't, and it's grossly naïve of me to think they ever would. The problems of urban America are not easily addressed in an up-or-down vote. And there's no powerful political constituency praying and lobbying for the desperately poor the way the religious fundamentalists are pushing for Terri Schiavo's feeding tube to be reinserted.

Four people were slain in Boston last weekend while Congress worked on trying to keep one Florida woman alive in a vegetative state that her doctors said she will never overcome.

The victims were good people -- and maybe some not-so-good people -- shot and stabbed, in a bar, in cars, and even in stark daylight on a city bus. There were no officials in Washington talking about that.

It's an hourly event in this and every other city: Potentially good children slip into drug-addled lives of violent crime because they've never been shown another way.

They go on to become miserable, predatory adults. Girls become pregnant, furthering the cycle of poverty. Law-abiding neighbors, also known as the working poor, barricade themselves in their houses and apartments out of fear of what's happening outside.

Neither the president nor the Congress ever rushes back to Washington in the middle of Easter break on behalf of these people, and I suspect they never will. The reason is simple: The sanctity of some lives isn't held in the same high regard by our sanctimonious and simplistic leaders.

Brian McGrory is a Globe columnist. He can be reached at mcgrory@globe.com.

Friday, March 25, 2005

Bud has spent the last 24 hours talking through his nose. I don't know where he got it. I don't think he's copying anyone, actually; I think he just discovered that he has the ability to change the pitch and tone of his voice. He's actually discovered two variations - one with the nostrils constricted, and one with them flared. And now that he has made the discovery, he has decided to talk exclusively in that voice.

He sounds a little like Lily Tomlin's telephone operator character Ernestine ("Is this the party to whom I am speaking?") But mostly he sounds like he's got a significant hearing impairment. Couple that with the fact that he has such an eccentric speech pattern to begin with (echolalic phrases strung together to approximate the correct meaning with a totally atypical syntax), and he is mostly unintelligble to anyone outside the family.

Like most kids with ASD, Bud doesn't let go of things quickly. He is grooving on this nasal speech and is settling into a comfortable pattern of usage. I'm at a loss as to how to steer him away from it. I tried ignoring it, and it just persisted. I tried positive reinforcement for using his normal voice. Last night he wanted ice cream for dessert, and I told him I'd be happy to get it for him if he asked in his regular voice. He opted to forego the ice cream. Currently, I'm feigning ignorance and telling him that I can't understand what he's saying when he talks that way and urging him to "try again." No luck there either.

Friday, March 18, 2005

I'm learning his language more quickly these days. This one only took me about a week to get.

Bud's been fascinated with my ears lately. More specifically, he's been fascinated with my earlobes. I thought he was taken with my earrings at first, but he's actually drawn more to my ears when I'm not wearing them. The conversations have gone like this:

(Bud, pulling my ears): "Mama, what's this?"

"They're my earlobes."

"It's buttons."

"No, honey, they're called earlobes," (And I say this, embarrisingly enough, in a condescendingly educational tone, as though I think he's too thick to retain the word "earlobe" if, in fact, that's what he means.)

"Mama, what's this? Ear buttons."

And so the conversations have gone. Until last night. He was playing with the little earringless holes in my ears and said "Mama, it's ear buttons."

Tuesday, March 15, 2005

We have a running joke at our house that the family cars are the only sibling Bud is ever going to have. But he does really, truly treat them like family members. He has zero interest in vehicles in general - bunches of Matchboxes that don't get any play-time, diggers and construction vehicles that barely get a glance. But the family cars are a whole different story. They are greeted by names that he has given them: Black Car, Blue Car, and Nana's Car. When we pull into the driveway and another car is waiting he shouts "Hi, Nana's Car! We missed you!" And the comments he makes in relation to the cars give me endless fascination - just another glimpse into the unique perspective of Bud:

** We were talking about colors one day and Bud said, very excitedly, "Green! That's Nana's Car's favorite color!" (As opposed to "Nana's car is green.")

** Riding in the backseat of the minivan, Bud announced "Mama! Blue Car is wearing glasses!" I climbed into the back with him and asked what he was looking at and sure enough - the rounded rear-view mirrors sticking out from either side of the vehicle looked like little granny specs perched on the "nose" created by the hood of the car.

** A steady snow began falling last week while we were inside a building. As we walked through the parking lot and the car came into sight, we saw that it was covered with snow and Bud told me "Mama, you need to shave Black Car." Well, of course - the snow looked just like shaving cream, and the scraper looked just like daddy's razor! It was time for a shave!

** Later, after 18 inches of snow had piled up and it was time for snow removal, Daddy was clearing off the roof of the van, and Bud told me "Daddy is giving Blue Car's head a scratch."

Friday, March 11, 2005

Well, it finally happened. On some level I've been holding my breath waiting for it to happen. On another level it caught me totally off guard.

I'd run into some moms that I've gotten friendly with. (We occasionally get together for a mom's night out without kids - that sort of thing.) I was standing between Jack's Mom and Matt's Mom, and heard Matt's Mom say "Matt is really excited about Jack's party. Any suggestion for presents?" The question barely registered with me, but I happened to glance up at Jack's Mom and that's when I saw the look.

It was half deer-in-headlights and half hand-in-the-cookie-jar. It was a furtive glance at me (completely void of eye contact) and a quick switch to Matt's Mom with an almost audible level of meaningful eye contact - a plaintive "Ix-nay on the arty-pay."Had it not been for the look, the question would have continued to not register. Had it not been for the look, if I even thought about it I would have thought that Matt and Jack had a special friendship, or that Jack got to choose one friend for his birthday and chose Matt. Had it not been for the look, it would have been a complete and total non-issue.

But there was the look.

The look that said "I made a conscious decision not to invite Bud to Jack's birthday party." The look that said "He's just too different, too difficult, too immature, too unpredictable." The look that said "My kid just doesn't like your kid - nothing personal." The look that said, "This is awkward cause I know we were kind of starting to become friends, but this is my kid's birthday party and I don't want your kid to screw it up." The look that said "Get used to it."

The reality is that if Bud had any idea that Jack was having a party and he wasn't invited, he would not care in the least. The reality is that if I asked Bud if he wanted to go to a party at Jack's house, he would say "no." The reality is that if we'd been invited and I brought Bud to the party it would have been hard for him and we would have left early. The reality is that we probably would have made an excuse and not gone.

But would it have killed her to invite him? Doesn't she see that it's hard enough for him to just be in this world, without having people go out of their way to exclude him? Can't she understand that Bud is the most amazing little person she is ever likely to know and she is wasting this opportunity and robbing her son of the experience of knowing him?

Monday, March 07, 2005

In a previous post I mentioned Paul Collins's terrific book Not Even Wrong: Adventures in Autism, with a promise to expand on it later. Here is the expansion.

Not Even Wrong is part-memoir and part-historical reference guide. Collins intersperses a retrospective look at autists and autism research from 1725 to the present with his own thoughts and emotions as his young son is diagnosed with autism. His perspective is at once intellectually objective and lovingly subjective. It is a fascinating read, and has easily become one of my favorite autism-related books.

I especially appreciate that through his title - Not Even Wrong - Collins has given me a framework to explain one of the most fascinating aspects of Bud. Collins writes:

"Wolfgang Pauli used to deride colleagues in theoretical physics who disagreed with him as "not even wrong." He meant this as a put-down - that the questions they were asking were so off-base that their answers were irrelevant. Yet Pauli's notion could also be applied to those who are autistic. They do not respond in expected ways to questions or to social cues... but then, only a person working from the same shared set of expectations could give a wrong answer. The autist is working on a different problem with a different set of parameters; they are not even wrong."

Collins was writing specifically about the autist's lack of a "theory of mind," or the understanding that other people may have a different perspective from one's own. But I find that the "not even wrong" idea goes beyond that. Often - very often - Bud says things that are seemingly meaningless - complete nonsequitors that are easily overlooked. But if I take the time, if I reconstruct his world, if I use my theory of mind to try climb inside his brain, I am astonished at the connections I can make.

One of my favorite of those moments of enlightenment went something like this:

We were at the supermarket and Bud got a superball out of the quarter machine at the door. It was a swirly, translucent, unremarkable superball. I hoisted him up into the shopping cart, and he held up the superball and said "Mama, what's this?" (This is one of Bud's favorite activities. He will make a proclamation: "I following the footprints!" and then test me on it, "Mama, what I'm doing?," either for his own edification or so that he can be sure that I get it. Regardless of my answer, I am quizzed for the next 15, 30, 60 minutes - "Mama, what I'm doing?" - I guess, to make sure I don't forget.)

So, I replied "It's a ball."

He said, "It's a hamster." (A hamster?) "Mama, what's this?"

"It's a ball," I said, slightly less sure of myself but feeling the need to hold my ground.

"No," he said. "It's a hamster." I started panicking. Was it a hamster? I held it up to the light to see if there was a hologram inside that I was missing, but it was just a regular old superball.

"I don't understand, honey. Can you tell me more words?"

"It's a hamster. Just like church." Then, like when all of a sudden the dots in a magic eye picture become the face of Dwight D. Eisenhower, it all fell into sharp focus for me and I got it.

We go to a tiny little church, where Bud is usually the only child in their even tinier "Sunday school" program. His favorite toy in the playroom there is a marble-run building set. But he keeps forgetting the word "marbles," and instead he calls them "gerbils."

The superball - round and translucent and swirly - is a lot like a marble/gerbil, only it's different.

And what else is like a gerbil, only different?

A hamster, of course.

Not even wrong. Remarkable, insightful, completely outside-the-box, but not even wrong.

A couple of shows worth catching or - if you're like me - worth setting on TiVo because you're sure to forget to watch when they actually air:

Heart of a Lioness , on Animal Planet, is the extraordinary story of a three-year-old lioness in Kenya who, after apparently losing her pride in some sort of traumatic incident, "adopts" a newborn Oryx antelope calf, which is, of course, it's natural prey. As I watched the footage of the two together, I found myself holding my breath and wondering which, ultimately, would win - the "mothering"/nurturing instinct that the lionness clearly had for the antelope, or the hunger and the biological instinct to hunt? The documentary is compelling as it depicts a series of events that simply couldn't happen - but did. This is reality television at it's best.

If you're looking for something a little less serious, don't miss Comedy Live: Dylan Moran on BBC America. I'm not usually a fan of stand-up comedy, but I stumbled across Moran's act one night and was immediately hooked. He is truly laugh-out-loud funny.

Another fun show on BBC America is the sit-com My Family, which stars actor Robert Lindsey. I've been a fan of Lindsey since the late eighties when six other people in the world and I enjoyed the movie Bert Rigby, You're A Fool. (Is it even available anymore? Has anyone else ever heard of it?) Anyway, My Family is smart and funny and easily better than almost any situation comedy currently airing on US network television.

Wednesday, March 02, 2005

I was introduced to this writing by Mark Twain on Sunday (fittingly, at a church service), and it has been on my mind since. My understanding is that it was written by Twain in 1904 to give voice to his opposition of the Phillipine-American war, but he was unable to get it published. Harper's Bazaar rejected it as being "too radical." It was published posthumously in Harper's Monthly in November, 1916, when the World War gave it new relevance.

Tuesday, March 01, 2005

One of my favorite books dealing with autism (and perhaps one of my favorite books full stop) is Beth Kephart's A Slant of Sun, which is a memoir of her son's early years of life with PDD-NOS. I first read it shortly after Bud was diagnosed, and was startled by how similar her son was to mine. I have read it several times since, and find myself using it as a reference book: "Let's see... what was Jeremy doing at this age?"

Then about a year ago, I read another of Kephart's books, Seeing Past Z, and it almost took my breath away. There was Jeremy, now 14 years old. He's bright, creative, verbal, quirky, interesting, engaging, popular; he is, quite frankly, everything that I hope my son will be. Seeing Past Z is not about Jeremy, in the way that A Slant of Sun was. He plays a supporting role in this story, the focus of which is a writing group that the author runs for Jeremy and his classmates. What struck me most was that Kephart never made mention of Jeremy's beginnings, and anyone who read the book without having read A Slant of Sun would find him off-beat and colorful, but by and large a perfectly normal kid. Dare I dream?I found myself trying to read between the lines - practically trying to pry apart each individual page - to figure out how he - how THEY - got where they are. What therapies, what interventions, what prayers, what path led them to this wonderful place? I even tried to e-mail Kephart, both to thank her and to plead for a little bit of guidance. But the e-mail link on her author web page is not working, and I'm left to wonder how, how, how?